Thank you. Who is your ENT? One of my first surgeries was done at the New
England Medical Center and for the life of me I can't remember the ENT's
name. He was wonderful and caring...very good. I have been literally from
Coast to Coast and been treated everywhere. (Military) The reason I was at
Cleveland Clinic was Dr. Don Lanza was recommended as the second best
surgeon in the country...Dr. David Kennedy being the first...but as we
know that is a matter of opinion depending on who you ask! Lanza now runs
the Sinus and Nasal Institute in Florida so I was switched to Ann Arbor
with Dr. Jeffery Terrel who seems quite competent so far. Yes, the
mucocele has gotten into the bone...specifically creating a huge hole in
my orbit floor. My eye is stable and sight not affected yet so they are
waiting to create a new eye socket for me as it is quite dangerous. In the
meantime they remove what they can of the mucocele along with taking the
chronic disease out of the other sinuses. Lanza said he had never seen
such severe disease which was pretty depressing. I am being treated now
with high doses of prednisone, sprays, inhalers, antibiotic nasal wash,
painkillers, etc. and have some relief though the meds are making me
"crazy". I fear that 23 years off and on this stuff has damaged my immune
system totally and now have to deal with chronic pain in my joints,
tendons, muscles until they figure out what to do. I am babbling. Sorry.
Make a good day! Trudy...Me You've Seen, Don't Be A Putz, Go See The
World.
> Thank you. Who is your ENT? One of my first surgeries was done at the New
> England Medical Center and for the life of me I can't remember the ENT's
[quoted text clipped - 3 lines]
> surgeon in the country...Dr. David Kennedy being the first...but as we
> know that is a matter of opinion depending on who you ask!
I saw Dr. Lanza. He swore that there was nothing in my ethmoid sinus
that needed surgical repair, and sent me on a wild goose chase to find
evidence of recirculation phenomena. He was wrong.
The surgeon who did my surgery was Dr. Eric Stein. He's got a practice
in Chelmsford MA.
> Lanza now runs
> the Sinus and Nasal Institute in Florida so I was switched to Ann Arbor
[quoted text clipped - 5 lines]
> chronic disease out of the other sinuses. Lanza said he had never seen
> such severe disease which was pretty depressing.
Any idea how this happened? I assume you had been treated for sinusitis
all these years. How do the doctors explain it progressing to this
stage despite treatment?

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Don Brady - 25 Sep 2004 17:06 GMT
>> Thank you. Who is your ENT? One of my first surgeries was done at the New
>> England Medical Center and for the life of me I can't remember the ENT's
[quoted text clipped - 10 lines]
>The surgeon who did my surgery was Dr. Eric Stein. He's got a practice
>in Chelmsford MA.
I hope this really reinforces to people that they need to get multiple
opinions, especially if the case is difficult, and not choose hastily among
them...
iamthezookeeper - 26 Sep 2004 14:15 GMT
"Any idea how this happened? I assume you had been treated for sinusitis
all these years. How do the doctors explain it progressing to this stage
despite treatment?"
That is a good question and one I have never had totally answered by the
experts. They tell me it is from having hypoplastic sinus with no
landmarks resulting from and accident I was in when I was 13 that crushed
the left side of my face and damaged the right. I was put back together
back on the outside but the internal damage was another story. I ended up
with sinusitis/samters triad/asthma when I was 23 and have been treated
since. I had another sinus infection a few years back and went to my
family physician. She was out so they gave me the Nurse Practioner. She
said I was fine even though I had a fever, ached, epithelial cells in my
urine and told her something was wrong. She said I had the flu, go home
and rest. The next day my face started hurting pretty badly and she put me
on a Z-Pack which didn't help. The next day my face was red, hot, swollen.
She said give it time. My doctor was back the next day and when I called
she said get in here. I went and she took one look at me and sent me to
the opthomologist who sent me directly to the hospital. I had periorbital
cellulitis that was 1/2 inch from my brain stem and they put me on IV
Tequin. They did a CT scan and came back in the room, my ENT, Optho,
Infectious Disease...all said you need to go to Ann Arbor right now. The
mucocele had broken the orbit floor and came up through it...which hurt
like hell. Dr. Harris performed the surgery to remove the mucocele along
with polyp disease in all sinuses and I did pretty well until it came back
about six months later. That started a cycle of surgeries that is ongoing.
They can't get all the cells of the mucocele as it grew into the bone and
keeps coming back. They won't repair the orbit floor until we run into
trouble as my eye is stable and my sight not affected. I have to be very
careful about infection as it likes to travel down my optic nerve, so I
try to take care of myself and stay relatively healthy, which lately is
hard as something has happended to my immune system from all of this...but
that is another story.
Trudy...What if the Hokey Pokey really is what it's all about?
iJah - 27 Sep 2004 14:39 GMT
<snip>
>They won't repair the orbit floor until we run into
>trouble as my eye is stable and my sight not affected. I have to be very
[quoted text clipped - 4 lines]
>
>Trudy...What if the Hokey Pokey really is what it's all about?
i'm sure you well know that steroids (prednisone) can suppress your
immune system - maybe you've been using a lot of these? also, no doubt
just the stress and worry caused by the illness itself further
supresses your immune system - it's a vicious circle, no?
iamthezookeeper - 29 Sep 2004 14:26 GMT
iJah...I have been on/off prednisone, prednisolone, medrol for 23 years
now. That is what most likely caused the damage to my immune system along
with the multiple surgeries and stress. The cycle is vicious as you say
but to be alive and breath is better than the alternative...at times.
Trudy.